A half-day education program for healthcare students on communication support for people with amyotrophic lateral sclerosis

Figures & data

Table 1. Program outline.

	Contents	Time (min)
Opening	Orientation	15
	Pre-test	10
Session-1 (90 min)	Lecture: ALS and care Understanding ALS	20
	Movie ‘Gisoku’ (case of patient)	10
	Review	10
	Lecture: Chapter 1 Concept of support Social resources & multiple disciplines	25
	Review	10
	Lecture: Chapter 2 Communication types and choices Letter board, Kuchimoji	15
Session-2 (90 min)	Watching video material: Communication board method	5
	Practice: Communication board	30
	Watching video material: Kuchimoji method	10
	Practice: Kuchimoji	30
	Review	10
	Lecture: Continuation of Chapter 2 Bell, Dedicated devices	5
Session-3 (90 min)	Lecture: Communication devices (Let’s Chat)	5
	Practice: Let’s Chat	5
	Lecture: How to adjust the speed	5
	Practice: Let’s Chat after adjustment	5
	Lecture: Continuation of Chapter 2   Utilize PC, How to select devices etc.	10
	Lecture: Chapter 3 Public support system Physical resources Human resources	10
	Review	5
	Lecture: Chapter 4 ALS stage-specific approach to the introduction of communication devices Summary	30
Closing	Review	5
	Post-test	10

Notes: Each session took 90 min. In the practice session, participants conducted transmission practice using the three designated AAC methods. The number of transmitted letters in each practice was evaluated for 5 min. Gisoku: the title of a 9-minute video produced by the broadcasting club at Nissei Gakuen Daiichi High School. Its copyright has been managed by the Mie ALS Association. ALS: Amyotrophic lateral sclerosis.

Figure 1. Study design: a waiting-list control design.

Notes: This figure shows the flow of the study at one university. Here, implementation was conducted with one group of six participants at one university (The full study was conducted at four universities using the same flow). All participants, except for those in the last group, completed the same program twice at 6-month intervals. The effect of the education program was evaluated by comparing the outcomes between the first attendance (Beginners) and second attendance (Experienced).

Table 2. Correct answer percentage for each question in the pre-test/post-test.

Question number		1	2	3	4	5	6	7	8	9	10
Beginners	pre-test	71.4	17.9	51.8	57.1	73.2	53.6	41.1	37.5	64.3	51.8
	post-test	67.9	71.4	69.6	87.5	94.6	37.5	44.6	60.7	82.1	69.6
Experienced	pre-test	70.3	43.2	67.6	67.6	89.2	45.9	54.1	62.2	83.8	54.1
	post-test	73.0	75.7	81.1	89.2	97.3	27.0	64.9	67.6	94.6	59.5

Notes: The table shows correct answer rate (%) of pre-test/post-test for each question for Beginner (n = 58) and Experienced (n = 47) groups.

Table 3. Mean pre-test/post-test scores for each group.

	Test	Score (out of 10)
Pre-test	Beginners	5.1 ± 2.0
	Experienced	6.0 ± 2.1
Post-test	Beginners	6.9 ± 1.9
	Experienced	7.2 ± 1.8
		(mean ± s.d.)

Notes: The table shows the pre-test/post-test scores for the Beginner (n = 58) and Experienced (n = 47) groups. Numerical data are shown in the style of mean ± standard deviation (s.d.) in the group.

Table 4. Number of letters transmitted in a 5-minute period for each AAC system by group.

AAC		Beginners	Experienced	P value
Flick		29.5 ± 9.1	38.2 ± 9.9	<0.001*
Kuchimoji		27.4 ± 7.2	33.0 ± 10.4	0.004*
Let’s Chat	default speed	14.2 ± 1.9	14.1 ± 2.7	0.827
	adjusted speed	25.7 ± 5.0	32.5 ± 9.2	0.001*
P value (default-adjusted)		<0.001*	<0.001*
				(mean ± s.d.)

Notes: The table shows the number of letters transmitted in 5 min using each AAC by the Beginner (n = 58) and Experienced (n = 47) groups. For each AAC method the number of transmitted letters was compared between Beginners and Experienced by t-test. In Let’s Chat^® sessions, the numbers before and after adjustment to a suitable scanning speed were also compared between the default-speed group and the adjusted-speed group for Beginners and Experienced using paired t-test.

Notes: Numerical data are shown in the style of mean ± standard deviation (s.d.) in the group. The asterisk * shows significance (P < 0.05). AAC: augmentative and alternative communication

Table 5. VAS change rates by AAC.

AAC	Role/speed setting	Beginners	Experienced	P value
Flick	Patient	2.0 (1.4–4.1)	1.6 (0.8–2.4)	0.154
	Caregiver	1.6 (0.9–4.5)	1.1 (0.8–2.2)	0.34
Kuchimoji	Patient	1.6 (1.0–1.9)	1.0 (0.6–1.3)	0.001*
	Caregiver	1.2 (0.8–1.9)	0.9 (0.7–1.1)	0.054
Let’s Chat	default	1.5 (4.5–1)	1.9 (1.1–2.7)	0.858
	adjusted	1.0 (0.6–2.5)	1.2 (1.0–2.3)	0.337
		[median (lower quartile–upper quartile)]

Notes: The VAS change rate was defined as the ratio of the two VAS scores just after to just before using each AAC. This was used to evaluate the change in the subjective burden for each AAC. Mann–Whitney U tests were used to compare the two groups (34 Beginners, 38 Experienced). The column ‘role / speed’ shows the role of practicing AAC in Flick and Kuchimoji, and the setting of the speed in Let’s Chat^®. Numerical data are shown in the style of the median from lower quartile to upper quartile in the group. The asterisk* shows significance (P < 0.05). AAC: augmentative and alternative communication

Figure 2. Co-occurrence network.

Notes: The figure was created with KH Coder^® based on the frequency and pattern of words in free-text comments, without consideration of the analysts’ intentions. Words with strong co-occurrence were arranged close together and connected with lines. Circle sizes corresponded to the frequency. The numbers on the lines indicated the Jaccard coefficients. Larger values suggest a stronger degree of co-occurrence. Words reflecting feelings of burden were separated into ‘time burden’ (circle A), ‘technical burden’ (circle B), and ‘eyestrain’ (circle C). The other group (circle D) directly reflected burden relating to ‘speed’.

Table 6. Coding table of the four extracted concepts.

Eyestrain

(‘blink’ & ‘tough’)|(‘blink’ & ‘patience’)|(‘blink’ & ‘confusion’)|(‘blink’ & ‘hard’) |(‘eye’ & ‘tired’)|(‘eye’ & ‘burden’)|(‘eye’ & ‘dry’)|(‘eye’ & ‘tough’) |(‘eye’ & ‘hard’)|’dry-eye’

Technical burden

‘difficult’|(‘understandable’ & ‘unable’)|(‘understandable’ & ‘difficult’) |(‘practice’ & ‘need’)|(‘get used to’ & ‘need’)|(‘get used to’ & ‘unable’) |(‘transmit’ & ‘unable’)|(‘transmit’ & ‘difficult’)|(‘make mistakes’ & ‘many’) |(‘make mistakes’ and not ‘few’ and not ‘small’)|(‘miss’ & ‘make’) |(‘miss’ & ‘much’)

Time burden

‘slow’|(‘time’ & ‘annoying’)|(‘time’ & ‘long’)|(‘time’ & ‘take’)|(‘time’ & ‘need’) |(‘frustrating’ and not ‘decrease’ and not ‘disappear’)|(‘wait’ & ‘hard’)|(‘wait’ & ‘tough’)

Ease

‘smooth’|’convenient’|’easy’|(‘get used to’ and not ‘unable’)|(‘get used to’ and not ‘need’)|(‘burden’ & ‘less’)|(‘burden’ & ‘decrease’)|’ease’ |’not tired’|’wonderful’|’good’|’easygoing’|’fun’|’happy’

Notes: From the characteristic words extracted via KH Coder^®, four concepts emerged: ‘eyestrain’, ‘technical burden’, ‘time burden’, and ‘ease’. The coding rule was settled that a combination of the particular expressions shown in the table should be regarded as an appearance of the concept given in the heading, e.g. ‘blink’ and ‘tough’ in the same sentence without negative expression to ‘eyestrain’.

Table 7. Difference in the number of coded concepts between the groups.

	Eyestrain	Technical burden	Time burden	Ease	(total)
Beginners	29	66	32	93	174
Experienced	23	94	48	139	246
(total)	52	160	80	232	420
Chi-square value	4.378*	0.000	0.026	0.271
	(*P = 0.036)

Notes: Number of occurrences of each coded concept was tabulated and compared between groups by Chi-square test, which showed a significant decrease in eyestrain of the Experienced group (P = 0.036).

Table

1		Choose two correct statements from the following five items about concepts of communication support for patients with neuromuscular disease.
	a	Support with adjusting input equipment (switches) connecting to Japanese scanning comunication aids (JSCA) is a top priority.
	*b	Supporting communication for patients with neuromuscular disorder requires making them familiar with the use of methods.
	*c	Supporting communication for patients with neuromuscular disorder requires a support team along with all people involved and the family.
	d	The patients’s own QOL is more important than the carer’s.
	e	The carer’s own QOL is more important than the patient’s.
2		Choose two correct statements from the following five items about communication methods with letter boards for patients with neuromuscular disease.
	*a	Precise information can be delivered using a communication board (with letters) method.
	b	Japan Industrial Standard (JIS) provides arrangements for communication boards (with letters).
	c	It takes about 1 month to become familiar with using a communication board with letters.
	*d	There is a method of communication that does not involve using a communication board.
	e	Communication board methods are not popular these days.
3		Choose two correct statements from the following five items about communication methods that do not use IT devices for patients with neuromuscular disease.
	*a	Methods that do not use IT devices are convenient alternatives and are available anytime and anywhere.
	*b	Methods that do not use IT devices are beneficial in learning how to employ Japanese scanning comunication aids (JSCA).
	c	Methods that do not use IT devices require electricity.
	d	Methods that do not use IT devices make it difficult for lay people to master the necessary techniques.
	e	Methods that do not use IT devices take considerable time and are impractical.
4		Choose two correct statements from the following five items about communication methods that use IT devices for patients with neuromuscular disease.
	a	When people use IT devices, a dedicated device should be selected where possible.
	*b	If people cannot obtain a dedicated product, a general personal computer can be substituted.
	c	If people use a personal computer, it is not necessary to consider what is suitable for their needs or living environment.
	*d	Some applications are available on computers, tablets, or smartphones to enable a patient’s communication.
	e	When a patient uses an IT device, it is not always necessary to adjust time or spatial resolution to match the patient’s ability.
5		Choose two correct statements from the following five items about selecting communication methods for patients with neuromuscular disease.
	*a	Each patient’s needs should be considered.
	b	When people choose a method, the patient’s living environment is not a high priority.
	*c	It is necessary to avoid excessive burden for the family or carers.
	d	A method exists that uses a transparent communication board with letters as an IT device.
	e	A method exists that uses kuchimoji, an oral shape and eye-blink method without a board, as an IT device.
6		Choose two correct statements from the following five items about introducing communication aid equipment for patients with amyotrophic lateral sclerosis (ALS).
	a	It is better to introduce AAC to the patient early on, regardless of the stage of illness.
	b	Support by a small number of people at the beginning is suitable for the patient to avoid changing members as the disease progresses.
	*c	There are no problems in changing supporting members and systems according to the stage of illness.
	d	It is efficient to provide patient support that is limited to specific professional categories and coworkers.
	*e	Support is better delivered by a multidisciplinary team, with many kinds of health-care professionals than by specified health-care professionals or particular individuals.
7		Choose two correct statements from the following five items about introducing communication aid equipment in accordance with the trajectory of the disease.
	a	At the stand-by stage (still no need to use CA devices and products), support is considered after an actual need appears.
	b	At the using stage, consider maintaining support with the present equipment.
	c	At the difficult stage (unable to use existing support), withdrawal of support should be considered.
	*d	Upon introduction of CA devices and products, physical residual function and needs of each patient should be considered.
	*e	On introduction of CA devices and products, improving the patient’s total environment, including daily living, should be considered.
8		Choose two correct statements from the following five items about attention points for all health-care professionals providing services and support for communication with patients with neuromuscular disease.
	a	All health-care professionals should become able to provide communication support and adjust input equipment (switches) connecting to JSCA as AAC products.
	b	Any health-care professional who cannot help directly should not enter the support team and should keep away from discussions on communication help.
	*c	A coordinator is necessary for the multidisciplinary team. The role should not be restricted to a medical doctor but open to any health-care professional able to fulfill the role.
	*d	It is useful for people who learn about communication aid devices and products to cooperate with the IT support center for the disabled.
	e	Enhancing courses on communication support for patients with neuromuscular disease should be encouraged in undergraduate education programs.
9		Choose two correct statements from the following five items about institutions and their support of communication for patients with neuromuscular disease.
	*a	In Japan, support is available both to obtain AAC and the human resources for learning how to use it and keep patients communicating.
	b	Government institutions as public support system for patients with difficulty communicating are uniform in Japan.
	c	Government institutions as public support system for patients with difficulty communicating seldom change over time.
	*d	The legislation of Act on Comprehensive Supports for Persons with Disabilities exists in Japan; it covers support for devices and products.
	e	No institution for patients is affected by a municipality’s financial condition.
10		Choose two correct statements from the following five items about institutions to support communication for patients with neuromuscular disease.
	*a	As product support, the specific communication aid also covers Japanese scanning comunication aids (JSCA), as defined by the prosthetic device expense subsidy system.
	*b	As product support, the specific communication aid covers portable voice output communication aids (VOCA), defined in the class of daily living products for disabilities.
	c	As support for devices and products, the specific communication aid does not cover information and communication aids, defined in the class of daily living utensils.
	d	Patient rehabilitation is not defined as regaining communication using a communication aid device.
	e	In Japan, it is not allowed for doctors to prescribe rehabilitation support with a specific communication aid device through the medical insurance system or long-term care insurance system.

Data availability statement

Ishikawa T, Narita Y, Fukuroku K, Takahashi E, Mizumoto C. Gross numbers of letters as the effect of a short-term training program for augmentative and alternative communication on health-care students after 6 months. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20(sup.1):340.